Social aspects of sharing consumer genetic testing information online

With the rise of access to the Internet and mobile/digital platforms, people are increasingly using social media to share health information (Pew Research Center). However, little is known about whether sharing includes sensitive topics such as genetic information, which could have implications for privacy and discrimination. As part of an ongoing longitudinal study examining responses to consumer genetic testing from two companies, we report on those consumers who indicated sharing on social media networks, the types of networks, and predictors of sharing. Participants were surveyed at baseline, 2 weeks and 6 months following receipt of test results. Currently, 986 participants have responded to the 6-month survey. Overall, 6% of participants discussed their results on general social media networks (e.g., Facebook), 4% shared on health/disease-based social network sites (e.g., PatientsLikeMe), and 1.5% shared on both. Bivariate analyses were performed to examine demographic and psychosocial predictors of sharing. Those who shared on general social media sites tended to be younger (mean age = 43 vs. 47, p=.06) and were more surprised (p=.05) and happy (p=.02) with their results. Those who shared on health/disease-based sites tended to be female (73%, p=.06) and were more uncertain about the meaning of their results for their family (p=.02). Interestingly, having considerations about privacy of genetic information was not associated with sharing on either network. Survey results suggest that consumers may share across different networks for different purposes. Implications for health communications professionals will be discussed.